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Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective?

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Author: Engelen, V. · Detmar, S. · Koopman, H. · Maurice-Stam, H. · Caron, H. · Hoogerbrugge, P. · Egeler, R.M. · Kaspers, G. · Grootenhuis, M.
Source:Pediatric Blood and Cancer, 5, 58, 766-774
Identifier: 447241
doi: doi:10.1002/pbc.23158
Keywords: Communication · Monitoring · Oncology · Patient reported outcomes · Pediatrics · Quality of life · adolescent · adult · anger · article · child · childhood cancer · clinical effectiveness · cohort analysis · controlled study · emotion · family functioning · fear · female · follow up · human · intervention study · major clinical study · male · outcome assessment · patient referral · patient satisfaction · preschool child · priority journal · quality of life · sadness · school child · self esteem · social psychology · Healthy Living · Healthy Living · HL - Healthy for Life · Themalijn


Background: The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. Procedure: Children with cancer participated in a sequential cohort intervention study: intervention N=94, control N=99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). Results: The QLIC-ON PROfile increased discussion of emotional functioning (control M=32.9 vs. intervention M=47.4, P<0.05) and psychosocial functioning (M=56.9 vs. M=63.8, P<0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P<0.01), fear (14% vs. 0%, P<0.01), and sadness (26% vs. 0%, P<0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P<0.05), family activities (P<0.05), and psychosocial functioning (P<0.01). Conclusions: We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice. © 2011 Wiley Periodicals, Inc.